my experiences and daily life as a parent of deaf children

Monthly Archives: March 2014

The last post celebrated the start of engaging my girls’ imaginations and having fun with vocab to create stories without boundaries. Just over a year ago, we experienced an incident that was no “tall story”, and it’s only recently, that I’m starting to appreciate the need for little ones to also communicate their thoughts and feelings about less than fun experiences.

With the development of language and communication, I have realized how incredible the girls’ memory is. For some reason, just because they haven’t been able to express their thoughts around certain events, I’ve assumed that once the even was over, they no longer thought about it; that silenced voices equated to silenced thoughts. How wrong I have been!

About 14 months ago (the twins were then just on 2 ½ years old), we decided to take a weekend break from our rural village, and explore one of the game farms nearby. It really was a beautiful setting, with thatched cabins that were spread across an emerald lawn. Such lush grass had attracted a family of warthogs that had been grazing on their knees all morning. Initially, we were all intrigued by their presence as they seemed rather tame, but as the day went on, they became “part of the furniture”. One rather large female, was taking a nap in the shade near our cabin. It had just stopped drizzling, so the light was lovely. I decided to try to “capture the moment” of my family on the deck of this gorgeous chalet, and these sweet little warthogs minding their own business around us. So, off with my camera, I ventured a few meters in front of the deck to get my “shot”. As I was composing my picture and testing out the lighting, horror of all horrors happened. Hadassah, wanted to join me, and started walking down the stairs towards me, I saw that she had not noticed the warthog in the shade, and should she make her way to me, I felt that she’d be too close to it for my comfort. I screamed to her to stop (of course not yet knowing that she was deaf). In a few moments, which suddenly went on pause mode in my view as I tried to intervene in time, Hadassah had reached the grass, startled the warthog, and it had charged her. This rather large creature had hit her in the mouth, and we were all beside ourselves. After cleaning the mud and blood out our little Dassie’s mouth, and deciding to have her immunized for rabies, we managed to settle everyone, and spent the rest of the weekend in the family sized spa bath creating mountains of bubbles as an attempt to keep everyone out of range of spotting another terrifying warthog. This was a traumatic experience that led to the girls becoming rather fearful of animals (this is getting better now), and I felt terribly guilty about walking out onto the grass in the first place, but time went on, and I thought that the girls had forgotten about the incident (well, at least the details.)

Two weeks ago, Hadassah came up to me and I could see that she wanted to tell me something…when she has a story coming, she gets a look of intensity as she works out how she’s going to express herself and she starts swaying. Through words and sign, she started telling me about that warthog. How she had wanted to go to mamma, then the warthog saw her and ran and hit her in the mouth and Hadassah was crying. My poor baby, this event, over 14 months ago now, had been anything but forgotten. She now tells the story in pieces every now and then, and we reassure her that the warthog was naughty, mamma is sorry and it won’t hurt her again and it is very far away now. What is quite sweet, is how Tahlita also mentions how this whole fiasco had also happened to her (which it hadn’t but she had witnessed it, and maybe with the bond of being a twin, felt as though it had happened to her). This irritates Hadassah so much, and her signing is very exaggerated and intense as she explains to Tahlita that the warthog hurt Hadassah NOT Tahlita.

Besides learning that even the tamest of wild life can be unpredictable, it’s also been a very humbling discovery,that just because one is unable to vocalize something, certainly doesn’t mean that their thoughts are also silenced. This quote by Maya Angelou makes me feel like a terrible mother for not realizing this earlier, but how true are these words? “There is no greater agony than bearing an untold story inside you.” I am hoping, that the improvement in our ability to communicate and the girls’ ability to express themselves, will allow for the purging of horrible memories and emotions, that is necessary for my little girls to fully recover from this traumatic experience, that they have clearly not forgotten, and at long last are able to work through, using language. I think that from now on, encouraging them to express their thoughts and feelings about experiences, both good and bad, is going to become a priority in our home.

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I’ve mentioned many times, of how my girls’ vocab and communication abilities have improved over the past few months. From celebrating simple 2 word sentences only 4 months ago, we’re now finding ourselves able to converse about what happened in the day, what they feel like eating and just the “normal” every day chatter (mixed hands and voices in our home of course) which to me, have been moments that 4 months ago, I could only dream of. It is not perfect, but what an improvement! Through going to school, accessing language which has unlocked a love of learning, having lots of ideas and activities suggested through our HI HOPES interactions and endless READING, we are making good progress.

One thing that I’ve been looking forward to, which I experienced for the first time the other day, has been engaging their imaginations. South Africans are very spoilt with beautiful weather most of the time, and last weekend boasted one such glorious day when we decided to take the girls for a morning on the beach. It was low tide when we got there, so hand in one hand and little nylon nets in the other, we tip-toed between the shallow pools that rested among the clusters of rocks that were basking in the sun. We had such fun exploring the little crevices, chasing the crabs, and snatching up the odd little fish in our net to get a closer look at the colours and patterns that they had been designed with. For the first time, we had a wide range of vocabulary to play with that coloured our previously limited conversation.

After exploring for some time, we made our way back to the sand to have a few sips of juice and build sand castles. A concerned little Tahlita pointed out that we all had a few little scratches and scrapes on our feet from connecting with a some sharp edges of the barnacles that clung to the rocks that we had been exploring. That’s when their little imaginations started to overflow with the extraordinary. Hadassah, inspecting her tiny wound, looked up at me, and with a sudden expression of amusement, suggested that she had been bitten by a blue fish that had pink stripes. Tahlita, shuddered at the thought, and with great animation, exclaimed that a big red crab had attacked her toe. Eden found this amusing. Like a domino effect, each new story gave life to an even bigger and more impressive adventure! In the end, Eden’s tiny scratch was evidence of a shark attack, and Mamma had been bitten by a whale!

With such impressive stories, the pain of the tiny wounds escalated, and these three heffalumps had to be carried up the beach and the million steep stairs that took us back to our car, as of course, such serious injuries, need extra TLC (of course mom’s whale injury was forgotten)! Completely out of breath by the hike home, muscles burning from lugging up the extra weight we had a good laugh at how it was all totally worth the display of thought creativity that at long last they were starting to express!

Days later, the stories were growing, and long after the scratches had totally healed, everyone was still comparing notes at whose ‘attack’ was the worst. The shimmer in their eyes and exaggerated signing, really has added to the whole theatrical experience as they have clearly loved the freedom that one’s imagination brings.

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I’ve always enjoyed having fun with my camera; trying new things, making a million mistakes, seeing things differently, and best of all, having the shutter time, aperture size,focus and all the other details come together to capture one unique moment in time. Before I had children, I engaged my photography hobby with architecture and landscapes, and then when the twins arrived, gone went my opportunities of staying out late trying to capture star trails, or spending hours in front of a light box…I had new subjects and they were far more beautiful than anything else my view finder had previously framed (and often far more challenging to capture). Up until their diagnosis, my camera was never far out of reach, and consequently I have quite a collection of “paused” life moments. I guess it was just part of the grief, but after I found out that they were deaf, every photo that I took of them, screamed that fact out loud to me… so, I packed away my camera. With acceptance and deciding to embrace our new reality, I decided to charge my camera battery and use my lens to embrace this new world too. I am loving the new “filter” through which I’m seeing my girls, and enjoying trying out new things and again, using my view finder to stretch my ability to see things differently. I love this truth about photography, “The camera is an instrument that teaches people how to see without a camera.” I must admit, their faces are aglow with joy and life since their silent worlds have been coloured with language and communication – this is priceless to capture!

For those of you whose only link to the deaf world, is this blog, do you know how to greet a deaf person, introduce yourself and ask them how they are? I certainly did not this time last year. It doesn’t take long to learn and is actually quite fun!

There is a grocery shop in our town who has a deaf teller at one of the check out points. One morning whilst waiting in the queue to pay for my groceries, I noticed that this lady was working at teller station number 3. She would greet each customer and thank them in sign language. Most of the customers didn’t make any effort to engage with her, and I actually also realized that most of them hadn’t even realized that she was deaf. She looked sad and lonely. It was my turn to be served, and teller number 2 had become available. I held back and ushered the man behind me to go forward and take my turn by going to teller 2. I wanted teller 3! The automated voice then called for teller number 1. Again, I ushered forward the next customer behind me. By this stage, I was getting some rather puzzled looks. Finally teller number 3 became available. Rather nervous, as I literally had only a few weeks of sign language exposure behind me, I made my way to the third teller and with a smile, signed, “Hello! How are you?” This little lady’s face absolutely lit up! With a huge smile, she signed “hello!” and then, I’m afraid, those super quick little fingers lost me. Gulp, I was about to make a mammoth idiot of myself. I fumbled over a few signs, trying to explain that I had only just started learning sign language, so didn’t understand all that she had signed. Oh, she was so gracious, and slowly signed over, wrote the odd word down for me to read and thankfully, I could finger spell. Essentially, she wanted to know why I knew how to sign (bless her, I certainly didn’t know how to sign, but I sure was trying to communicate with her.) I explained to her that my 3 daughters were deaf, which I managed in sign, except at that stage I didn’t know the sign for “daughter”, so had to finger spell it. As I tried, and fumbled and was corrected, I relaxed, and started remembering more and began to enjoy myself. Groceries paid for, and we signed our thanks and goodbyes, and I glanced back to the queue of people that were waiting to check out. Man, had we gathered a bit of an audience! I felt myself become hot, as my cheeks resembled the tomatoes that I had just purchased, as there was certainly nothing elegant and fluent about the way I had just used my face and hands, one didn’t have to know anything about SASL to know that I was a beginner with a capital B!

Once unpacking my groceries in my car, I realized that I needed to return to the shop to hand in an application form for a “Myschool Card” where I had selected HI HOPES to be the beneficiary. (Basically a card that you swipe every time you shop at selected stores that contributes a small portion of your purchase amount to a charity of choice. It costs the customer nothing, and every swipe eventually adds up, I guess.) Anyway, as I entered the shop, I glanced over to where my new friend was serving. She wasn’t able to see me from where she was. She was aglow! Her eyes were alive as she enthusiastically signed “hello” and “thank you” to every customer that she served. Her smile was absolutely priceless, and well worth my awkward attempt at signing!

When I started learning to speak Zulu, as I worked in the rural hospital, I was more than happy to try the new words that I had learned with the patients that entered my room. Often, there would be no interpreter, and I’d just have to do my best. There were moments of complete confusion, and many a moment of silence, but in the end, I could hold a fair medical conversation in Zulu (with the odd homemade sign or gesture to help convey the message.) One thing that was evident, was that the patients really appreciated my effort to communicate with them in their language. Sign language is no different, it’s still very new to me, but at every attempt I learn something new, and become more comfortable at “messing up” for the sake of learning how to do it better next time. One thing is sure, that little deaf lady really appreciated my attempt to converse with her in her language, in spite of it being anything but perfect.

Below is a link to a video clip on “Talk Sign’s” Facebook page. At the end of the clip, they demonstrate the basic greetings in South African Sign Language. Take a look, and learn something new, then teach your family and work colleagues over lunch (it’s the only language where you can ‘talk’ with your mouth full!) And then, should you see a deaf teller, or meet someone deaf in any setting, I dare you to take a deep breath and swallow that pride, and go greet them, introduce yourself and show them that they are worth engaging with, and that their language is worth recognizing. Follow Mark Twain’s advice, “Why not go out on a limb? That’s where the fruit is.”

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Writing and posting up these blog posts has been a somewhat cathartic process. Having a space to express my thoughts and struggles, admit my short comings and put words to my hope, is a wonderful blessing. It’s also through remembering what has happened in just on 8 months now, that I am able to reflect on this journey thus far, and truly appreciate the absolute treasures and miracles that have been dotted along the way. So much has happened, so much has changed, and yet so much is still to happen and change in the future. There are parts about certain aspects of the future that are still daunting, but I do not feel alone as I did when this journey started, which was the most daunting aspect by far.

Making my story public, and deciding to allow parts of my heart and head to be on exhibition, is a rather intimidating process. Every now and then when my stats pop up, I am reminded that it is not just this laptop screen that is listening to my thoughts and sharing my journey, but many people have stumbled upon this blog in one way or another. Sometimes, I’m tempted to close up and hide, in a moment of feeling vulnerable. The wonderful comments, “likes” and encouragement that are posted with every post remind me of why I take the time to splash my fears and victories onto this screen. So thank you for those! I’m hoping that our story will encourage parents of deaf children, and challenge medical professionals to be better at handling families that have children with hearing loss. I’ve also wanted to let everyone else who’s interested, have a peek into this reality, and by default, I’ve found a place to spill out that which threated to boil over.

I received a message recently that came through this blog that really touched my heart and gave me a perspective that my story has common threads with the stories of others, far beyond what I had ever imagined…that the story of love, hope, challenges, disappointments and overcoming obstacles goes far beyond the realm of deafness.

Another South African family with a similar background to ours, has two precious and much loved children, a little girl of 3 ½ and a baby who is 6 months old. Both their children have something called, Leber’s Congenital Amaurosis, a condition that has essentially left both of them legally blind. Their mother shared some of their experiences with me and made me realize that our journeys have had parallel aspects. It was very special to hear someone who has experienced similar pain, yet also has similar hope, just share that with me, and express how reading about my story gave her a reason to feel less lonely on her journey as a mother of children with special needs. I’m excited to get to know them better with time. She has also started a blog which can be found at: http://www.youcaring.com/tuition-fundraiser/help-hannah-and-daniel/119848 Please follow this and support them where possible.

If making our story transparent and public, helps ease the pang of loneliness just a little, for just one person, I’d say it’s worth the intimidation of the raw vulnerability that I sometimes feel as I click on the “publish” icon.

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Having now been in “the city” for 6 months now, we’ve made friends that have children more or less our girls’ ages. Consequently, we’ve been invited to their children’s birthday parties. A little gathering to celebrate a precious little life, and make the little birthday girl or boy feel particularly loved and valued. I have always loved seeing the delight in a child’s eyes, as they see their birthday present pile grow, as each new friend arrives. What’s even better is the moment of the cake and candles. What child doesn’t love this part! I have very creative friends, so the cakes are always much anticipated by everyone, as we know it will be something that has been decorated and crafted with much love and effort.

My girls, when arriving at a little party, make a bee-line for the food. Eden generally finds the spot near the potato crisps, and literally, will not budge until the bowl is finished. Tahlita’s new favourite sign is “to share”. Of course it’s used liberally when it best suits her. It’s always at the party table that she points to every single snack or treat, offers a colorful paper plate, and very sweetly, reminds me that this would be a good time for “sharing”…sharing everything with her, that is. Hadassah is growing in confidence, and from time to time is graceful enough to muster up a smile for a stranger instead of a defensive frown. She likes to use the sign for “friend”. Where we live, this is a very cute little sign, which denotes hands being held between friends. When she recognizes a child who arrives, she points to them shyly, and then with her little smile that wrinkles up her nose, signs “look, friend.”

I, however, find kiddies parties really hard. I try so hard to focus on the little munchkin being celebrated, but every now and then throughout the party, I kind of zone out and just observe. And what I see are groups of children, chatting and playing, engaging with music, little groups of giggling girls whispering to each other, kiddies having long stories to report back to mom, the birthday angel expressing delight in their gifts or there cake…there is a lot of very fluent spoken language going on, and much enjoyment of sound. The activities like “pass the parcel”, and others that I grew up loving, typically involve music or sound of some kind. During these activities, I find it difficult to explain to my girls the concept of the game, and then, in spite of help from friends, it’s obvious that they simply don’t have nearly as much fun with these games as the other hearing children do. Looks like I’m going to have to get creative again, when it’s their little party, to find games and activities that are not reliant on sound.

And then an unavoidable part, are the guests who do not yet know me or my family. There’s still lots of staring as the hearing aids are spotted, and chatter between themselves about their kiddies’ schools, and activities, and funny things that their children had said. This is completely “normal”, but it’s these times of feeling quite separated, that I struggle with challenging my concept of “normal”.

When Eden was first diagnosed, someone said to me that in a way, it was a blessing that Eden was also deaf. Initially, I was almost offended by this, but it didn’t take long, before I realized what she meant. My girls are different, and in a group of hearing, chatting children, may very well feel a sense of isolation. However they have each other – the three of them, at this stage are like a little trio of signing, babbling little munchkins adorning six little pink friends between them…their relating to each other, gives them that sense of belonging, and as a result, almost a sense of oblivion to the fact that they are different. I really noticed this at a recent party, the three deaf Birdsey girls, as “happy as Larry” because they have each other. They really are funny to watch – they catch each other’s jokes, find some tiny idiosyncrasy of their sister’s hysterically funny, correct each other and help each other all the time. In spite of only being 60 seconds older than her sister, Hadassah really has taken the role of “big sister” quite seriously, and happily reports any mischief, like when Eden is stuffing her cup of juice with popcorn, or when Tahlita sneaks an extra box of Smarties (which she insists is just practicing “sharing”!)

As a hearing person, very comfortable in my ordinary hearing world, it is a strange thing not to view the world through a lens called “normal”. The everyday actives are constant reminders that my girls are different. But they also serve as constant check points ensuring, that I don’t for one second, slip back into any comfort zone of viewing anything as “normal”. Instead, at the next party that I find myself, I’m going to make an effort to look for the extraordinary in every child. I’ll try rather, to see all the little friends as unique little bodies, defined far beyond whether they have the ability to hear and speak or not. The segregation created by the word “normal” is largely in my own head, and I have the power to toss out that lens. Normal is boring, anyway, let’s go looking for the extraordinary instead!

I found this quote that sums up how to handle the tough experiences of every day life: “Don’t forget you’re human, it’s okay to have a meltdown. Just don’t unpack and live there. Cry it out and then refocus on where you’re headed.”